Two Rare Mama Bears

Transition from teenager to college-bound can be hard for any young adult, and frequently is increasingly more challenging for those with a disability to factor in.

Angela Maccarrone is a Masters student studying Clinical Mental Health Counseling at Gonzaga University in Spokane, Washington. Angela embodies busy young adult by representing the state of Washington as a MDA Ambassador, maintaining an active social life, and enjoying downtime with a good book, coffee shops, and labrador retrievers (not necessarily in that order). Angela shares with us proactive tips to moving out and being independent - lessons she learned as a young adult with SEPN1-related myopathy.

Transition from teenager to college-bound can be hard for any young adult, and frequently is increasingly more challenging for those with a disability to factor in.

Liam Miller is currently a sophomore Computer Science major at Temple University in Philadelphia, Pennsylvania who is not letting Collagen VI slow him down - he’s active socially and academically, as well as plays for the Philadelphia Flyers PowerPlay - Power Wheelchair Floor Hockey. Liam shares with us his experiences transitioning to college and the importance he learned in planning ahead.

Imagine being told your child has an ultra-rare disease that is life-limiting, muscle-wasting, and due to a spontaneous genetic mutation...simply put, this child’s muscles will get weaker faster than they can get stronger. This is the life Kyle Gagner and his wife, Melissa, leads and through the chaos of it all has founded Levi’s Hope, an organization to help families adjust and cope with the life-changing diagnosis of Congenital Muscular Dystrophy (CMD), including the subtype their son, Levi, is affected by - LMNA-related CMD. In this episode Kyle describes Levi’s Hope for us, as well as shares how his community finds joy within challenges, how his family has integrated disability into a fully lived life, and the hope they have for their son.

For the 5th year in a row, a team of cyclists connected to the Cure CMD community will participate in the Million Dollar Bike Ride (MDBR) on May 20th, raising money for rare disease research through the Penn Medicine Orphan Disease Center. In this episode, we chat with one of the MDBR Cure CMD team captains, Susan Lee-Miller. As an active participant in the CMD community for 20 years, Susan has learned having contacts within the community is essential for her own well-being. She discusses the importance connection within the community has been for her 20 year son, who is affected by Collagen VI CMD, and goes into detail on how her family and others have been able to have an impact on research for Collagen VI CMD, via the MDBR.

As a companion to our first episode “Welcome to Two Rare Mama Bears”, this episode is a deeper dive into Cure CMD - covering: what is rare disease, what is Cure CMD and it’s CMD subtypes, and the Cure CMD 10 for 10 campaign.

Welcome to the first podcast of Two Rare Mama Bears, a Cure CMD Podcast. In this episode Matty and Megan discuss the purpose and goals of the podcast, how they met each other, their respective diagnostic journeys, impacts on daily life, and how to encourage your family member with Congenital Muscular Dystrophy to excel and help figure out their normal despite overprotective fears!

Welcome to a *BONUS EXTRA* pre-launch introduction before our first episode of Two Rare Mama Bears, a Cure CMD Podcast. In this episode we talk about our excitement, a couple *SPOILER ALERTS*, and a favor we ask of our listeners. We look forward to sharing more episodes with you on May 1st.